Month Seven

Well, as you can see from Lincoln's big cheeks, he has had another great month. He has gained an average of 21 grams per day (the most since being at home). He last weighed 15 lbs 4 oz (<3rd percentile). He is 26 inches long (<10th percentile) and has a head circumference of 44.5 cm (50th percentile).

He is wearing all 6 month clothes (top and bottom!) and will be moving into the 9 month tops soon at this rate of weight gain!

Lincoln is becoming a happier baby as time goes on. It's wonderful to see his personality come through and that smile is adorable! It is getting pretty easy to make him laugh with tickling his sides or making a sudden noise and motion. (Usually it's me jumping around saying, "HA!" that does the trick. I know a lot of you out there cannot even imagine reserved, quiet me doing this, but kids bring out the best in you!) Linc also love to babble, especially with Daddy when he gets home at night.

Lincoln is doing well with sitting and enjoys sitting in his boppy for some support to play with all his new toys from Christmas! He can sit alone for quite a long time, but looses his balance sometimes. With the Boppy, Mommy can be hands-off for a few minutes!

I have been working with him on rolling. He still doesn't fully roll, but just today he did roll from back all the way to his tummy by himself! His therapist has recommended getting Linc into the crawling position more, with his legs bent, if he isn't too keen on rolling. She said it's perfectly fine if Linc doesn't roll, but we want him to crawl!

The train in the picture above and the car dashboard below are Lincoln's favorite toys right now (besides teethers!). He plays with these at least three times a day. He just loves to honk the horn over and over! He is definitely aware of cause and effect!

Since Linc's surgery, he has decided that he loves to eat solids and we are up to two 2 oz meals per day. Lincoln has had several fruits and veggies and seems to love green beans the most.

Lincoln has sprouted two bottom teeth in the middle, which has caused many sleepless nights. He seems to be working on some upper teeth too.

The past day or so, Lincoln has really discovered his feet. He noticed them a few weeks back, but then lost interest. Now he's grabbing them all the time!

Linc's neonatologist is so happy with Lincoln's growth and respiratory status and recovery from his last surgery that she has has given the go ahead to wean Linc's oxygen flow down from 0.8 LPM to 0.7! We are just waiting on new flow regulators to make the small adjustment. Lincoln was on such high support when he came home, needing 1.5LPM to eat and higher when upset, that he is using adult equipment. In order to wean by a small increment like 1/10, Lincoln needs to be switched to pediatric equipment. Once he does well on 0.7 we can go to 0.6.

Lincoln has appts at SLCH on the 18th for surgery, newborn med, and an echocardiogram.

A Good Day in the OR

Lincoln's inguinal hernia repair surgery went well today. His surgeon who repaired his diaphragm hernia performed the surgery. She was so pleased to see Lincoln and how big he has gotten. It's been about two months since she has seen him. He was smiling at her and talking a little. She just loved it! After Lincoln was given an albuterol treatment, he was taken back for the surgery. We were told that he was very feisty and did not go to sleep with the gas they gave him so he got his IV while still awake (poor baby!). They couldn't give too much sedation before intubating him though, so there wasn't much choice. I guess he still has quite a tolerance for sedation.

The surgeon did find that Lincoln actually had a hernia on both the left and right, so she repaired both. She said she tried to look at his diaphragm with the camera, but Linc's liver is covering the repair location. But from what she could see, it all looked good. The whole procedure took about two hours. Afterward, Lincoln was upset for some time in recovery and was very sleepy. He was whining and very hoarse with a sore throat from the breathing tube. The nurses were having trouble weaning Lincoln's oxygen back to his baseline and had to keep him on 2L while he was so upset. Over a few hours, and several naps later, Linc was feeling better and his oxygen was able to be turned down to his normal 0.8LPM and he was able to drink a little formula. So we were sent home with instructions to give tylenol every 4 hours for one day, then as needed. We will return in 4 weeks or so for a follow-up appointment with Linc's surgeon. The surgeon used dissolving stitches inside and skin glue on the outside, so we don't need to return for any stitches removal.

Lincoln's Newborn Medicine doc came by to see him in recovery since we haven't been back to see her in over a month. She was so pleased with Lincoln's growth (14lbs 12oz, and 25.75inches long! ) and she was happy to hear how well he is doing developmentally (close to sitting unassisted and talking up a storm!). She said she would call in a few weeks to check on Linc after he has had time to recover from surgery and if all is well, she will have me turn down his Os over the phone! She will also coordinate our next visit with Linc's surgery follow-up appt.

Since we have been home, Lincoln has been pretty much himself and has already taken a full bottle and gone to bed like the good little boy that he is. He has been such a trooper, as always.

Time Flies

Wow. Lincoln is 6 months old (coming up on 7 now!) and it is December already! Linc has been doing really well overall lately. He has been cold free for over a month! He has been showing a bit of his temper more than usual, with pinching and hitting, but that just shows his gross motor skills are improving! Lincoln is still fairly fussy, crying for several hours out of each day. Compared to four months ago though when we brought him home, it is night and day. He is much improved. We have just learned calm Lincoln as best we can and turn up his Os when he needs some extra help.

Lincoln's latest measurements are 14lbs 3 oz (<3%), 25" long (25%)and 43cm HC (25%). His head and length are getting up there! Now we just need to work on his waistline. I have started adding some olive oil to his diet to get in some extra fat. Hopefully that helps him gain a few lbs. He is taking anywhere from 3-6 oz per feeding (totaling about 24 oz per 24 hours - goal is about 33 oz) Lincoln still wakes several times per night. I feed him once at night and just rock him the other times he wakes. Lincoln has started eating a few solids over the past month, including rice cereal, oatmeal, carrots, sweet potatoes(the favorite by far!), and avocado. Aside from the sweet potatoes, he usually only takes 2-3 bites before crying, which is when I end the meal. There is no rush right now to introduce solids, so we are just taking it slow and trying to enjoy it, being careful not to create any aversions.

Respiratory status is stable. Still on 0.8 LPM oxygen 24/7. Linc has been getting albuterol treatments as needed for wheezing over the past month, and seems to be feeling much better. He only needs a treatment every few days and whenever I need to take him out in the cold weather he seems to need more treatments, but thankfully that isn't too often. Lincoln absolutely hates the treatments, but they do wonders for him.

Lincoln did not end up having his scheduled surgery on Dec 9th due to a possible stomach virus. Just to be safe his surgeon pushed back his surgery date to 12/23. Yes, Christmas Eve Eve. I hope that once his inguinal hernia is taken care of he will move forward a bit with sitting up. Linc has trouble sitting for more than a few minutes and seems to be in pain, I assume from the hernia. So far Lincoln is able to sit propped on his hands for a few minutes. His head control is great! He is still not able to roll from back to tummy though.

We have had a few visits now from Missouri First Steps, but really we are still just beginning. Lincoln will see nutrition and physical therapy once per month, and occupational therapy twice per month.

Lincoln's great Aunt Michelle was able to meet Lincoln for the first time when she visited with her husband the other day. Lincoln has also had a few visits with his Aunt Jen, Uncle Pat, and cousins Layla and Aubrey over the past few weeks. Lincoln is kind of hit or miss when it comes to outtings. He does seem to be very social when he is feeling comfortable. He willingly smiles and coos at even first time visitors. The first time he has reached for a person was for cousin Aubrey at our last visit.

As you can see, I have been having a great time taking pictures with Dan's old camera, given to him by his parents many moons ago. I actually decided to keep Linc home for his 6 month pictures and they turned out pretty good! I just was too nervous to take him to a studio during the most busy time of year for children to have their picture taken (Christmas). Maybe by his 9 month pics I will feel more comfortable taking him out. We currently only take trips to the doctor or the occasional trip to Grandma and Grandpas. No public places through April to keep Lincoln healthy. Lincoln has had a good month and we look forward to our first Christmas as a family!

First Steps Meeting

The visit from Missouri First Steps coordinators this morning went well. Based on my main concerned for Lincoln, self-calming and eating, his main therapist will be occupational. He will also receive support from physical therapy and a nutritionist. His first appointments are not set up yet, but we are going to start with OT twice per month and PT and Nutrition once per month. Lincoln will be re-evaluated every six months until age three, when he graduated from the program. Of course, I can change anything from frequency of visits to removing Linc from the program at any time if I feel the need. So far I am very happy with the people and services of MO First Steps and hopefully they will be helpful to Lincoln's development.

Second Report Card

Yesterday I took Lincoln to SLCH for his clinic appointments for Newborn Medicine and Pediatric Surgery, and Lincoln got his second good "report card!" Lincoln also did excellent in the car! He barely cried at all and seemed to enjoy himself at times. He likes to look in the mirror and just give him a blanket to feel and chew and he is alright!

Newborn Medicine was our first appointment and Lincoln was very fussy by that point. (It was time for his morning nap). After he was weighed and measured (12 lbs 11oz, 24.5 inches long) I was able to calm him and he slept for about 15 minutes while I talked to the doc. Lincoln was refreshed enough for a quick exam after that and a breathing treatment of Albuterol to help with his on-going wheezing and coughing. He hates the treatments, but they help him a lot. His wheezing was completely gone after the treatment. I am to continue nebulizer treatments of Albuterol at home ever 6 hours throughout the weekend and then switch for twice per day to help Linc get over his wheeze, hopefully stopping all treatments within about 10 days. The doc said it is very common for kids that were on the vent for a long time to wheeze, especially the first winter. She does not expect Lincoln to be "asthmatic" or to need treatment long-term.

Otherwise, no changes for Linc. His doc was pleased with his weight gain (approx. 20 grams gained per day since our last visit - perfect!) and happy with Lincoln's tone and physical development. He will remain on the concentrated formula to help him catch up. Even though his average weight gain was good, he is still well below the average weight for his age group. Linc will remain on 0.8LPM of oxygen, probably throughout the winter. His doctor doesn't want to push him too hard when he may be catching colds. I am still really hoping Lincoln is free of lines by the time he crawls! That would just be a nightmare!

Linc also had an echocardiogram  and chest x-ray in between the two visits. Lincoln did great for both. There was a TV in the room for the echo so Lincoln pretty much watched cartoons the whole time. The last echo Linc had was back in June right after his repair surgery. At that time he was still on the ventilator and Nitric Oxide so the two echos are really not exactly comparable but it was all the doctor had to go on. Although Linc's echo yesterday did show improvement and good function overall for someone who is oxygen dependent, there are still signs of some hypertension. Therefore, Lincoln's surgeon, neonatologist, and cardiologist all agree that he should stay on his small dose of sildenafil. The hypertension does not appear to be severe enough to justify increasing Lincoln's dose, but since he still has some hypertension present, so discontinuing the med is not wanted either. The doctor said that she would like to see another echo in about to months.

Lincoln was not too happy to get his chest x-ray, but it was over quickly. They were able to get good pictures the first time. His x-ray looks good, with no signs of reherniation or pneumonia. After the x-ray we headed up to see Linc's surgeon. She was also happy with Lincoln's growth and health.

Lincoln has had a suspected inguinal hernia since birth that has not caused any issues until recently. (Yes. That makes three birth defects in all.) I actually brought Linc to the ER Monday night after a short episode where he seemed to be in pain, but everything turned out to be OK. His surgeon was notified of our visit and she suggested setting a surgery date to repair the hernia. I was hoping to have Lincoln's inguinal hernia repaired at the same time as his hypospadias but the urologist wants to wait until Lincoln is closer to 1 year for that and the inguinal hernia is more urgent. I scheduled Lincoln's surgery to repair the inguinal hernia for December 9th. It is expected to be an easy, outpatient surgery and Linc can go home that evening. It will be nice to have another thing fixed and off of the "watch list."

Lincoln was exhausted by the time our five hour trip was finished and he fell asleep fast in the car on the way home. Overall, it was a really good trip with lots of good things to report on Lincoln. His doctors and I are just pleased as punch. Lincoln's next clinic will be next month, just before his surgery.

Synagis Shot, and Side Notes

Linc had an appointment at the pediatrician this morning for his first Synagis shot (RSV antibodies). He did ok in the car on the way there. He likes it best when the car is moving, as most kids do. Lincoln was in a pretty good mood after being taken out of his car seat. We got his weight (12 lbs 5 oz = less than 1% for his age, but at least he's growing!) to verify the Synagis dose. No other measurements were taken though since his 6 month well visit isn't until next month.

Lincoln was smiling and talking to Dr. Fitz-James when she came in. She was very pleased with his progress, especially head control and awareness of his surroundings. She told me that Lincoln's cough and sneezing probably meant he had another cold. She said he most likely has had a string of different infections, rather than one cold lasting for the past 6 weeks since Lincoln has had some days when his symptoms are better. She said as long as his SO2 stays up that his wheezing and coughing are nothing to be too concerned about. His airways are not completely healthy yet and some respiratory "stress" is to be expected. If his mild upper respiratory symptoms turn into lower respiratory symptoms, that is when we get worried. She did find a mild ear infection in Lincoln's right ear, probably due to him having nasal drainage for so many weeks. Lincoln has been more irritable the past 4 days or so, but he never ran a fever or pulled at his ears. She prescribed a round of antibiotics to make sure he gets over the infection.

The doc gave the go-ahead for Lincoln to start experimenting with solids in a few weeks since he is holding his head up in-line now when sitting. She also said that giving Linc some water and juice are ok too to make sure his bowels stay soft since he is on a concentrated formula, and may need some extra fluids. After the doctor was finished, the nurse gave Linc his Synagis shot, which was quite big, almost one ml. He also got a few of his 6 month vaccines so that he doesn't have so many shots at once next time we visit. He will get his flu shot next month too, as he will be 6 months the required minimum age! In all Lincoln got 3 shots in his thighs and one oral vaccine. He wasn't too happy after that (poor baby), but he soon fell asleep in the car and has been since. The doctor did say that Linc could run a fever from the shots and of course he may be irritable.

It was a good visit and nice to have a professional look Lincoln over, especially with his lingering cold symptoms. Needless to say, I worry about Lincoln constantly as a first time mom in addition to Linc's CDH. It's a little comforting to know he now has the RSV antibodies to help him out this season, and next month he will even have the flu vaccine to help more! Lincoln will go back to the pediatrician every 28 days through RSV season (Nov - March) to get a Synagis shot to help him fight any RSV he may come in contact with. Linc has two doctor appointments (Newborn Med and Surgery) and an echocardiogram scheduled for this Thursday at St. Louis Children's Hospital Clinics. Hopefully he will get two "good report cards" this week.

Side Note #1
Lincoln was accepted to the Missouri First Steps program for his home developmental therapies! He was accepted based on the DAYC evaluation that was taken a few weeks ago. He scored below his age group (5 months) in all five categories, but had to score at half of his age to qualify.
Cognition - 4 months
Communication - 3 months
Social/Emotional - 1 month
Physical Development - 3 months
Adaptive Behavior (self calming/dressing/bathing)- Birth

We have an appointment this Friday to discuss frequency of visits and what therapies Lincoln will benefit from. The Missouri program is more family based than the private agency we were using before, meaning the goal is to teach me, the parent, to help Lincoln, and not depend on only therapist working with Lincoln. He will have one main therapist, probably a PT, but she will have access to OT and Speech as consults if we run into a road block. I'll know more after our visit Friday. I'm so happy that Linc was accepted. This way I know I will get he help I need to help Lincoln catch up properly.

Side Note #2
Since I didn't post for Halloween, I thought I would sneak these pictures in of Lincoln's first Halloween. He didn't dress up, but still looked festive in a Jack-O-Lantern shirt and sleeper. We just stayed in and handed out candy to the many trick-or-treaters we get.

I LOVE this picture!

Mommy and Linc.
(My first attempt at using the timer on our camera.)

My bright eyed boy.

It was a long night. Those Trick-or-Treaters kept comin!